Patient Networks – List of Conditions

PCORnet is the nation’s Patient-Centered Clinical Research Network.   Patients may have an interest in learning more about the Patient-Powered Research Networks (PPRNs), especially if they have a condition that one or the PPRNs will be focusing on.  Click on a condition name below to learn about the PPRN serving that condition.

A  |   B  |   C  |   D  |   E  |   F  |   G  |   H  |   I  |   J  |   K  |   L  |   M  |   N  |   O  |   P  |   Q  |   R  |   S  |   T  |   U  |   V  |   W  |   X  |   Y  |   Z

Patient Conditions: AAdrenoleukodystrophy
Adult congenital heart disease
Aicardi syndrome
Alpha-1 antitrypsin deficiency (Alpha-1)
ANCA-associated vasculitis
Angelman syndrome
Ankylosing spondylitis
Atrial fibrillationPatient Conditions: BBatten disease
Becker muscular dystrophy
Behçet’s disease
Bipolar disorder
Breast cancer
BRCA 1/2
BronchiectasisPatient Conditions: CCDKL5 disorder
Central nervous system (CNS) vasculitis
Chronic bronchitis
Chronic obstructive pulmonary disease
Churg-Strauss syndrome (CSS)
Cogan’s syndrome
Cogan-type oculomotor apraxia
Congenital bilateral perisylvian syndrome (CBPS)
Continuous spike and wave of slow sleep (CSWSS)
Crohn’s disease (adult)
Crohn’s disease (pediatric)
Cryoglobulinemic vasculitisPatient Conditions: DDekaban-Arima syndrome
Doose syndrome (Myoclonic-astatic epilepsy)
Down syndrome (pediatric, with seizures)
Dravet syndrome
Duchenne muscular dystrophy
Dup15q syndrome
Dyskeratosis congenita

Patient Conditions: E

Early myoclonic encephalophathy
Electrical status epilepticus of slow sleep (ESES)
Eosinophilic granulomatosis with polyangiitis (EGPA)

Patient Conditions: F

Familial pulmonary fibrosis
Focal segmental glomerulosclerosis (FSGS)

Patient Conditions: G
Giant cell arteritis (GCA)

Glut1 deficiency
Granulomatosis with polyangiitis (GPA, Wegener’s)

Patient Conditions: H

Heart disease
Henoch-Schonlein purpura (HSP, IgA vasculitis)
High blood pressure
High cholesterol
Hypocomplementemic vasculitis
Hypothalamic hamartoma

Patient Conditions: I

Infantile spasms/West syndrome
Inflammatory bowel disease (adult)
Inflammatory bowel disease (pediatric)
Inherited bone marrow failure

Patient Conditions: J

Jeavons syndrome
Joubert syndrome
Juvenile nephronophthisis

Patient Conditions: K

KCNQ2 mutation

Patient Conditions: LLandau-Kleffner syndrome
Large vessel vasculitis
Lennox-Gastaut syndrome
LupusPatient Conditions: MMeckel-Gruber syndrome
Membranous nephropathy (MN)
Microscopic polyangiitis (MPA)
Minimal change disease (MCD)
Mitochondrial disorder (Alper’s Disease, Leigh’s Disease)
Multiple sclerosis
Musculoskeletal disorders
Myoclonus epilepsy with ragged-red fibers (MERRF)Patient Conditions: NNephrotic syndrome
Neurofibromatosis type 1
Neuronal ceroid lipofuscinoses (NCL)Patient Conditions: O

Ohtahara syndrome
Ovarian cancer

Patient Conditions: P

PCDH19 female epilepsy
Phelan-McDermid syndrome
Polyarteritis nodosa (PAN)
Prader-Willi syndrome
Progressive myoclonic epilepsy (PME)
Primary immunodeficiency diseases
Primary nephrotic syndrome
Pseudoxanthoma elasticum (PXE)
Psoriatic arthritis

Patient Conditions: R

RAS pathway disorders
Rasmussen’s encephalopathy
Refractory (non-reversible) asthma
Rett’s syndrome
Ring 14 syndrome
Ring 20 syndrome
Rheumatoid arthritis

Patient Conditions: S

SCN2A mutation
SCN8A mutation
Senior-Loken syndrome
Severe epilepsy with multiple independent spike foci (SE-MISF)
SLC13A5 mutation
Sleep apnea
Sudden arrhythmia death syndrome (SADS)
Sturge-Weber syndrome
SYNGAP1 mutation

Patient Conditions: T

Takayasu’s arteritis (TAK)
Telomere biology disorder/syndrome
Temporal arteritis
Tuberous sclerosis complex

Patient Conditions: U

Ulcerative colitis (adult)
Ulcerative colitis (pediatric)
Unverricht-Lundborg syndrome
Urticarial vasculitis

Patient Conditions: V

Varadi-Papp syndrome

Patient Conditions: W

Wegener’s granulomatosis

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Last updated on August 28, 2017